FLARE

christy & the professorsChristy & The Professors, originally called Christy (Christy Foster) & The Professor (Nathan Foster), started in early 2013 as a fun project for a husband and wife team. Shortly after launching the project, the duo wanted to build a full band and added a few friends to play drums, percussion, and do backing vocals in the group. In August of 2013 local guitarist Shane Pitmon heard the band live and a week later asked to join the lineup. Over the next couple months the band made a few more lineup changes and in November 2013 added drummer Ryan Hudson. After adding Ryan, the current lineup was in place and Christy & The Professors began work on their debut EP.

christyChristy, like us, has struggled with fibromyalgia. Being in a rock band, she wrote a ROCK song about how she was treated by the medical community and thought it might resonate with others who have had a similar experience.  The song is called FLARE!


WORDS:
And they say that they think that it’s all in my head
And I say that I feel I’d be better off dead
All the blood that they drew they could never be fed
Forget you

And they say that they know how I feel
And they say that they know what’s for real
You’re just a cog in a broken medicine wheel
Forget you

I-I am not your waste of time
Your pride is such a shameful crime
Your ignorance it blows my mind
Forget you

You think that you know me
But you’ll never know me
You are such a waste of time

You think that you know me
But you’ll never know me
I never gave you what’s mine
Forget you

I-I am not your waste of time
No no you are so blind
I-I am gonna blow your mind
Forget you

 

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Fibromyalgia Awareness – What YOU Can Do and Why

I’m really sick of sitting on the couch, too tired to do anything every day; and then, at 5.16 am (now), being unable to sleep. I need some help. I need somebody to come up with a better way to manage this condition. Better yet, I need someone to cure this condition. Really? You, too?

In fact, I am incensed enough to get back on my high horse and start another Fibromyalgia Awareness Campaign.

What you can do?

fibro 1

Weren’t you complaining about unexplained pain last week? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Haven't you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Haven’t you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I've been worried about how you're feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I’ve been worried about how you’re feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I know you've been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I know you’ve been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Got someone you're worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Got someone you’re worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Hey! This would explain why you have been feeling so tired all the time - Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Hey! This would explain why you’ve been feeling so tired all the time – Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Why we need to increase Fibromyalgia awareness

  1. (Most importantly) Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
  2. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about FM, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
  3. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
  4. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
  5. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
  6. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
  7. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
  8. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers will understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
  9. More support groups will be formed as a result of more people realising that they have fibromyalgia.
  10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Sounds good, doesn’t it?
Please, let’s give it a try.

Welcome our 1st Non-English Blog to FCK

As you may know, FCK is a directory of blogs that help spread knowledge and awareness of Fibromyalgia: blogs where you can get first-hand information from others who are going through the same experiences.

These bloggers educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia.

It is with great pleasure that I welcome our first non-English speaking blog to the directory:

Young people with Fibromyalgia (Portugal) (Jovens Portadores de Fibromialgia (Portugal))

portugueseThis Portuguese blog has two administrators: Joana Vicente, a 24 year-old in pain since she was 11; and, Fátima Figueiredo, a 13 year veteran of the fight with Fibromyalgia – sharing information about Fibromyalgia and other co-morbidities.

Este blog Português tem duas administradoras: Joana Vicente de 24 anos, que sofre com dores desde os 11 anos e Fátima Figueiredo de 35 anos que luta contra a Fibromialgia à 13 anos. Partilham informações sobre Fibromialgia e outras comorbilidades.

And, some-one please tell me if I messed up on the Portuguese!

Fibromyalgia Blood Test Accurate

blood bank

New research results have upheld the validity of a blood test that can diagnose fibromyalgia, according to the chief executive of a Santa Monica-based company that began offering the test earlier this year.

“We’ve proven that fibromyalgia can be diagnosed unequivocally through this test, a test that remains highly sensitive and specific,” said Bruce Gillis, MD, founder and CEO of EpicGenetics.

blood-cellsThe FM test looks for protein molecules in the blood called chemokines and cytokines, which are produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines in their blood, according to Gillis, and have weaker immune systems than healthy patients.

But critics said the blood test was unreliable because the same immune system biomarkers can be found in people with other illnesses, such as rheumatoid arthritis.

The new research, which was conducted by EpicGenetics, involved nearly 500 people. The blood test was given to 160 fibromyalgia patients, 100 lupus patients, 98 patients with rheumatoid arthritis and 119 healthy people who served as a control group.

Over 93% of the patients who had fibromyalgia were correctly identified by the blood test, according to Gillis, and over 89% of those who did not have fibromyalgia were correctly identified.

108. mutation“What we found is that the biomarkers do not occur in other rheumatologic diseases, it’s only in fibromyalgia,” Gillis told National Pain Report. “I cannot tell you if these biomarkers are the cause of fibromyalgia or if it’s a by-product from fibromyalgia. We don’t know that yet. But these findings are the first objective methods to prove a patient has fibromyalgia.”

“The test does two things. It doesn’t merely give you the diagnosis of fibromyalgia, it legitimizes the diagnosis of fibromyalgia,” says Gillis. “It proves it’s a real disease. It’s not a bogus affliction of neurotic, crazy, hypochondriacally people. They really are sick. There’s something wrong in their immune system processing.”

Much of the new research was conducted Daniel Wallace, MD, a rheumatologist at the Cedars-Sinai Medical Center in Los Angeles and a professor of rheumatology at UCLA. Wallace, who has written a number of books on fibromyalgia and other autoimmune diseases, is on EpicGentics scientific advisory board.  He could not be reached for comment on this story.

Dr Gillis says the research results were well received when he presented them last month at the annual meeting of the American College of Rheumatology in San Diego.

“It now I think eliminates the last criticisms by any naysayers regarding the test. It says that we listened to their criticism and we approached it in a direct fashion to answer the question,” Gillis said.

But some critics remain.

“I wish Dr Gillis well in his quest to establish even a shred of scientific credibility for his test, which has been vitiated by what Sir William Osler referred to as ‘the corroding influence of mammon,’”  wrote John Quintner, MD, a prominent rheumatologist in Australia, in an email to National Pain Report.

Quintner has been skeptical of previous research conducted by EpicGentics. So has Fred Wolfe, MD, a rheumatologist who has called the fibromyalgia blood test “junk science.”

Critics are waiting for the new research to be published in a peer-reviewed medical journal. Gillis says a report on the new study is still being written and he hopes to get it published in the next few months in a “highly regarded, well-respected, peer-reviewed journal.”

The FM test kit costs $744 and is not covered by most insurance companies. Blood samples are shipped to an EpicGenetics laboratory for testing and results are usually available in about a week.

From NationalPainReport.com

 

FibroModem – Health Activist?

blog_titled_transparent_2013-10-22Thanks to you, I have been nominated for a WEGO Health Activist Award.

Should I be honoured enough to win one, I will receive a subscription to research publications to stay current on the latest research and information about FM, which I will then be able to pass on to you.

If you would like to endorse me, please visit my WEGO profile page

WEGO Health Activist Award

I’ve been nominated for a WEGO Health Activist Award; and (I’ll admit it) I would really like (and be honoured) to receive one.

So, if you think I deserve one, please nominate me at the WEGO site.

Tee Hee! I’ll even guide you through the process:

  1. Type www.fibromodem.com in the web address space then click NOMINATE
  2. blog_titled_transparent_2013-10-22Click on BEST IN SHOW: BLOG
  3. Type fibromodem@fibromodem.com into the email space, then click NEXT
  4. Type in the reason why you think I deserve the award (and if it’s because I’m asking you, please don’t do it)
  5. Click on CONTINUE
  6. Find FIBROMYALGIA on the list of interests, then press CONTINUE
  7. Insert the URL address of the site you follow me on (as below), then CONTINUEWEGO
  8. Type in your details, then CONTINUE
  9. Click on SKIP
  10. And, finally, click on SUBMIT

Thank you.

LIVING WELL with FIBROMYALGIA (December Issue)

The latest issue of LIVING WELL with FIBROMYALGIA will be out and in your InBoxes tomorrow.

Have you subscribed? It’s free, fun and might actually help you.

Subscribe now by clicking on the cover picture below.

cover

The Care and Handling of Your Achy Crabby Friend …by Fibro in your FACE

newhairThis is from Fibro in your FACE. It made me laugh…and we all need that:

Congratulations on your purchase of a friend with fibromyalgia! With gentle care & small considerations, you will have a friend for a lifetime. Please take a moment to read these care instructions, & refer to them any time your friend appears to be fraying or wearing out.

1. Friend With Fibromyalgia can provide a lifetime of laughs and insight, listening & loving. It cannot necessarily do all these things on a given day or week, however. You may go an entire month without being able to get your Friend With Fibromyalgia to work properly. Please do not return it to the manufacturer; ask it if it needs anything or leave it alone. It will eventually return to factory specs.

2. You can help prevent Friend With Fibromyalgia from breaking down. When enjoying an outing with it, do not hijack it for extra quick trips or keep it sitting in one spot for longer than is comfortable. “Can we stop at this divine little cafe before we go home?” is a perfectly valid question, but remember that Friend With Fibromyalgia may have a limited number of times it can get in & out of a car before it starts to malfunction. “Let’s stay for another movie” or “Come on! Let’s dance!” might also be answered with a gentle “No”, lest it go into flare. It does not matter if Friend With Fibromyalgia could dance or go into 87 boutique shops last week. The weather has changed/the work week was rough/God only knows happened & now it cannot participate. Let it go home.

3. If Friend With Fibromyalgia is in flare, or is going into flare, even texts are difficult. Your Friend wants to help you & loves you very much, but your Friend also hopes they will die very soon to be rid of the pain & fatigue, so unless something very serious is happening (death, dismemberment), please do not ask Friend for assistance. Have you ever had the flu while several bones in your body are broken? Would you want to hear about work woes or significant other gripes while dealing with that pain? Your Friend With Fibromyalgia might be too polite to say, but it is not capable of dealing with First World Problems today. If it does not respond, it is simply not functioning today. It does not hate you; it hates being alive.

4. You can’t fix that. Don’t worry about it.

5. Sometimes Friend With Fibromyalgia will say or text garbled messages such as “Zgdbr83!!” or “I think I’m an hour outside of town but I don’t know where I am I probably won’t make it.” The first instance might be fine motor stuff; the second is cognitive fog. In the first case just let it go; in the second case ask Friend With Fibromyalgia to please text you when they get home to let you know they’re ok. Do not be alarmed if they forget that, too. They get lost a lot.

6. If you can drive Friend With Fibromyalgia, especially long-distance or multiple-stop trips, that’s a very good idea. It will be able to do more with you. Let it get out & stretch if it needs to. You can tell because it will start twitching or doing weird things with its arms or neck.

7. No matter how adorable & supple your Friend With Fibromyalgia appears, it’s not a bad idea to treat it like your 87 year old grandmother, even if it’s a child. If your 87 year old grandmother could sometimes walk 3 miles on the beach or dance for two hours, wouldn’t that be awesome? Think of your Friend that way.

8. Your Friend can’t eat fast food. Consider meals with your Friend an opportunity to explore freshly prepared cuisine with no mystery ingredients. Friends With Fibromyalgia cannot be fueled by anything with more than 3 syllables American & 2 syllables English*

*Say “strawberries” to yourself first with an American accent, then an English one. A real one, not Dick Van Dyke. There you go.

9. Your Friend With Fibromyalgia does enjoy hugs. It does not enjoy being compressed enthusiastically, shaken, or clapped/pounded on the back. That’s why it doesn’t go to sports bars despite really enjoying screaming about what a fricken piece of crap loser Eli is. Suck on the failure, Eli! SUCK IT!

10. Go easy on the commercial cologne. Your Friend has a highly tuned nervous system & can smell you from 7 blocks away even if you’ve just had a 5 minute shower with unscented soap. A spritz of your cologne is delightful. A cloud will cause Friend With Fibromyalgia’s head to explode.

If you do not believe you can comply with the care & handling of Friend With Fibromyalgia, it’s ok to just enjoy their online presence & Like or Favourite their many amusing comments. Your Friend doesn’t want to be a pain in your ass any more than you want to deal with someone who is over sensitive in the most literal, physical sense.

Bonus care tip: Friends in Flare don’t want to be pitied. They do want to laugh or be distracted from their pain. Absurd is best; it’s an absurd disease.

Just in Time for Christmas

What do you want for Christmas?

FibroModem Girl wants a cure for Fibromyalgia!

You can wear this new cartoon on your chest or above your heart by visiting the FibroModem Cafepress store.FB Xmas

The Frightful Fibro Foto Contest!

FighterZine have a new photo competition happening; and, I know how we all LOVE a competition!

lrg_Ornamental_Divider__Englische_Linie

If there is one thing that I have learned throughout my years with chronic pain, it is that not only is a little levity and laughter within one’s life important, but it is somewhat of a necessity. We need to have some fun, laugh a little bit every now and then. It’s one of those simple joys in life that can lighten the mood, and even sometimes maybe make us forget about our troubles, even for just a short time.

fibroThat is what inspired us to create a photo contest! Halloween is upon us, and it’s definitely one of my absolute favorite holidays! It gives us a chance to dress up and be someone else, maybe an alter-ego of sorts! You can have so much fun with it! Whether you’re creating a costume, or buying one, it’s all about the attitude that goes along with it! You’ve gotta own that costume, and work it! 

We’ve aptly named our photo contest The Frightful Fibro Foto contest, or Triple F for short! We’ll be collecting our entries through our website, Fibro.me, and they will be uploaded to both a specific page for the contest on our website and will be uploaded to a special album on Facebook, where users will be able to “like” the photos, counting as their vote. I’ve taken an example photo, which you can see right here! It doesn’t even have to be a full costume, even a mask will do, you can even get creative and hold up signs saying anything you want about Fibro, chronic illness, how you stay positive, anything you can think of!

What’s the prize, you ask? Well, there will be 2 prizes given to the grand prize winner. The first will be any 2 items of your choosing from our online Fibromyalgia Awareness Store, which you can find right here! The second prize will be the winner’s photo used as our awesome Fibromyalgia profile picture for one month, so everyone can see the awesomeness that is your costume!

So how about rules! They’re pretty straightforward.

  • One entry photo per person.
  • You can share our page with your friends and family asking them to vote for you.
  • No negative, derogatory or vulgar comments will be tolerated on any of the photos.
  • Entries will be accepted until the 25th of October, during which time voting will commence.
  • Voting ends on the 30th of October at 11:59 PM EST.
  • The winner will be announced on October 31st – Halloween! 

So let’s make this contest awesome! The biggest thing to remember is to HAVE FUN!

SUBMIT YOUR FRIGHTFUL FIBRO FOTO ENTRY RIGHT HERE!